Discontinue Hydroxyurea: Had a visit with a new... - MPN Voice

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Discontinue Hydroxyurea

Had a visit with a new Hematologist who is a recognized expert in MPNs. He has recommended a different tx approach for my Polycythemia Vera. Based on my profile, he recommends discontinuing hydroxyurea and going with phlebotomy only. I am having troublesome side effects and the new doc says risks (mutagenic) of HU in my case outweigh the benefits. Not currently suggesting a change to any other meds. Am reviewing with my primary hematologist. Am inclined to follow this recommendation. Anyone have experience with this approach to PV tx?

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I was on Hydrea for 15 years and have MF now at 74 with TP53 mutation. Not sure if hydrea caused this but it could have. I'd take his advice.

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Thanks for the input. The TP53 mutation is something the MPN specialist specifically mentioned when we discussed mutagenic risk of hydroxyurea.

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If I knew that 15 years ago I would have waited longer before taking hydrea. Angerlide is worse from everything I read.

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I does seem a bit like a choice of "pick your poison." I am having some hope that perhaps I will be able to get by with just phlebotomy and no chemo. I am not going to do anything without careful consideration of all options. We will see what happens.

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Phlebotomy is pretty safe I think. May the Lord bless you.

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Hi I read an older post of yours about your fear for AML. What happened it was MF in the end?

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I was diagnosed with PV back in October. My treatment so far has just been phlebotomy and low dose aspirin. At first I needed a phlebotomy every couple of days, but now the interval between the last two was 77 days. My doctor said he does not plan to prescribe hydroxyurea as long as the phlebotomy is effective in keeping my levels down. He wants my hemoglobin to stay under 15. Wishing you all the best!

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Thanks for the response. I am wanting to come off of the hydroxyurea due to side effects and risks. Working with my doc on that ASAP.

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I've been taken of Hydrea about two weeks ago, for exactly the reasons you are worried about (plus the side effect were terrible and I'm young so apparently infertility is a problem). But the choice was mine after speaking (nagging) to my Haem like three times. Now we try regular phlebotomies and ecotrin twice daily, at least until we can get hold of peg interferon. Like others have said, it's pretty much pick your poison. No meds = risk of clots and dangers associated with that, chemo = no risk of clots but makes you feel bad and risk further mutation and infertility. So far peg interferon seems the better choice - if your body can tolerate it well enough and it works for you.

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This is actually my third time on hydroxyurea. The first time was when I was in my 30s (about 30 years ago). The second about 5 years ago. Both times went off when numbers got better. Never had any trouble tolerating before. Now side effects (constipation, flatulence, immune compromise-mouth sores, thrush) are getting steadily worse despite decreasing the dose. In addition to decreased sperm count, recent research indicates that HU can also cause a decrease in testosterone production and that this is not always reversible. That latter is not apparently widely known or accepted, but it is a big concern. I will be also be considering peg interferon or Jakafi if I really do need chemical cytoreduction.

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Ok wow, even happier now that I hear about the testosterone because I am a natural bodybuilder and every bit of test is super precious to me!

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Great news for me, I've been off of Hydroxy for a month and yesterday my Haem was able to get in touch with a supplier of Peg Interferon, he is working out a dosage and hopefully I can start with it within the next two weeks!

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Hi Chris , wondering if you could tell me what problems you experienced on Hydroxy? Ive been on it for two months now without any major issues. Just want to know what to look out for.

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Sure! My issues was heavy headaches, nausea and bad fatigue. Now that I stopped it and waiting for new medication the only thing I experience is a little fatigue but I dont need naps like I used to on Hydroxy. But that wasn't the only reason I asked to change medication. I was bothered with the testosterone and infertility problems it causes, as well as the increased risk of other leukemia that comes with taking it for long periods (as I am only 36 now)

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Thanks Chris, i will have to look into the testosterone issue. I need every bit i have!

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Decreased sperm counts has been recognized for a long time. Decreased testosterone is fairly new in the research from what I could tell. At this point animal studies are showing testicular atrophy (decrease testes size/weight), diminished testosterone. There are some human case studies, one of which showed this was sometimes not reversible (scary thought!). If you want to look, search terms are testicular atrophy, hypogonadism, decreased testosterone and hydroxyurea (and all its derivative names). None of the side effects info lists this yet - hopefully more definitive information will become available.

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Well, I went off Hu about two weeks ago. A friend who is a doctor gave me a book on the connection between the mind and the body, called "The Power of Suggestion with Hypnosis" by Dr. E. Arthur Winkler. This book solidified and verified my understanding of human consciousness and its power. It seems likely that my own ET is a result of my perception of the world as not working properly. Platelets can be conceptualized as shields, so when threat levels (even metaphorical) are high, it makes sense (to a human body, which has limited ability to interpret the thoughts that its consciousness holds) to make more platelets.

In my case, it is the production of platelet factory cells ("megakaryocytes") that my body increased. The medical establishment cannot distinguish between "abnormal" and "unhealthy," and in my case, I believe my abnormally high platelet count is not unhealthy. Dr. Tefferi of the Mayo clinic recommended (I don't have time to look up the reference) NOT treating ET with Hu unless there are symptoms. My health insurance company (Kaiser) has not yet assimilated this kind of thinking, so I and my friend Dr. Blanscet agreed to go ahead with my personal plan to stop taking Hu. I am now working on teaching my body that the threat for which it is preparing by making extra platelet factories is not the kind of threat that extra platelets will help mitigate. At the same time, I've stopped calling it "too many platelets," and started calling is "abnormally high platelets." The rephrasing warms my spirit because my body has furnished me with extra protection, and my consciousness is now on the same page with it.

I remember reading something in high school (late 80s) about cancer patients envisioning cancer therapies working as designed and other patients not bothering to do that mental work. The experiment suggested that the mental work improved the efficacy of the therapy. This memory has been sitting in my mind for about 30 years. It explains why I tend to be radically optimistic about things, if you really think about it for a while. I read that article in Time or Newsweek for the Orange County Academic Decathlon all those years ago.

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The mind-body connection is indeed powerful and can do both good or ill. Hope your approach works. Really like your notion about abnormal vs unhealthy platelet numbers. My understanding of current research is that there is no direct correlation between platelet numbers and risk of thrombosis. Apparently leukocytosis is a higher risk factor than thrombocytosis. I hope your docs at Kaiser get caught up to the current thinking. Not sure corporate Kaiser will ever get there, but perhaps individual docs will.

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I just wanted you to know, that you gave me hope and a big mind uplifting. I also try to find out these body & mind connections (my therapist says it is another attempt of me to control my situation- and she definetely has a point!), but i trully believe that body and mind harmony have only good to offer in any situation. So... i saved your answer in my tablet as a screenshot,so i can return from time to time! I want also to tell you,that our spleen ,according to chinese medicine/philoshophy, represents our worries. In my case thadt seems correct! I have spleenomegaly and Generilized Anxiety Disorder the last decade! Thank you again for the uplifting comment ;-)

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Glad to hear that affirmation was helpful. I do really believe that the mind-body connection is quite powerful. It cuts both ways and can either help us or hurt us depending on how we handle it. I have experienced both the positive and the negative effects of this connection. Trying to take control of the connection, to the extent that we can, seems to me like a healthy rational thing to do. There are no miracles to come out of a positive approach to managing this, but it sure can help us heal and manage what we face. I have a new challenge to encounter. On top of the PV, I have been diagnosed with a brain tumor in the occipital lobe. Likely a lower grade tumor, but large enough that it is threatening my vision. It will require surgical intervention (scary)!! I am restarting practice of Tai Chi to help to help manage the stress and marshal the healing energy that comes from this practice. My hope is that by blending traditional Western medicine with some alternative healing practices I will overcome this newest challenge. Your post about the mind-body connection reminded me of just how important this really is - so thanks - it helped me as well. All the best to you on your journey.

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I am off the Hydrea and am on the Jakafi with no needs phlebotomists. My numbers have stayed down in low 40s with no true side effects except the norm of being tired. The phlebotomists also were causing anemia so that is a major reasons I had stopped those and when needed, I go in for hydration infusions, which help quite a bit.

Just another option...good luck to you..😊

Sheryl

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Glad to hear you are having a positive experience with Jakafi. It is at the top of my list of other options.

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My partner was having phlebotomy but he was becoming anemic and his platelet levels were rising. So our consultant but him on hydro. He is suffering really bad from fatigue now. It’s difficult to know what’s the best. 😢 he has PV only diagnosed about 11 months ago x

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Could you please give your platelets, haematocrit and haemoglobin?

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When everything got stirred back up back in April 2018 - PLT was 814, HCT was 58, and HGB was 18.8. Last Read a few days ago was PLT 462, HCT 40.1, HGB 12.8. RDW and RBC were also elevated in the past, but WNL now.

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Quite high at the beginning and you dropped them with the Hydro! Let's hope that only phlebotomy will help you but I'm afraid that in time your counts will go up again. Currently I am also out of it waiting to do a phlebotomy.

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Well hope springs eternal! I am willing to let the counts go up a bit, so long as I remain symptom free. There is a possibility of Acquire von Willebrand as part of the picture, just to make things more interesting. So - risk of thrombosis or risk of hemorrhage?? Only time will tell. If I do need meds, I will be looking at options other than HU.

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When I was first diagnosed with polycythemia at age 31 in August 2017, I was pregnant, so we watched and waited + 1 baby aspirin a day. My numbers actually fell into normal ranges and my symptoms went away, thanks to the extra production of fluid.

But as soon as he was born, my numbers shot up and symptoms returned. I had headaches that lasted weeks, fuzziness to the edges of my vision, a slight lack of mental clarity, and a constant blush to my cheeks and hands. And the *itching.* UGH.

So my doctor decided to avoid the potentially mutagenic HU and skip to Pegasys. He said he doesn’t necessarily go straight to Pegasys for everyone, but I had a high symptom burden for someone who’s never had a proven blood clot. I started that in September 2018, and it’s done absolute wonders. I hate needles, but it’s been totally worth it just to make the itching stop.

I live in America, and it was like pulling teeth to get Cigna to cover it. Last year, with United Healthcare, they were incredibly helpful and approved it right away. Because my employer changed providers at the start of the year, and I wasn’t with them last year, Cigna couldn’t tell me the price based on my employer’s selected plan until after I was signed up (so you trap yourself first, greaaat). It’s $215/month just for the med. It was free with UH. And the prior authorization process through Cigna was equally messy, as they lost the forms we sent multiple times and spent a month solid giving us the run around. But my doctor’s PA is insistent, and we got it done. Still worth it though.

Best of luck! I hope you find what works for you! :3

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Glad to hear you found something that works. If the new plan for phlebotomy only does not work out, then peg-interferon will be on the list to consider. I am fortunate in that my symptom burden is fairly low, though I may have developed Acquired von Willebrand. Time and more testing will tell that story.

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I have had the exact recommendation from my haem. Professor. Off Hydro and just venesections and aspirin. I keep my fingers crossed. Let's exchange information since we have the same treatment!

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I am now about 2 months out from d/c HU. I was at every 3 weeks phlebotomy - but the doc moved my to every 4 weeks. The based on 5/9 labs - hold off on phlebotomy. CBC done on 5/21 still shows good numbers HCT=34.8, HGB=10.5 - all other erythrocytes likewise low or WNL. RDW-CV barely high at 15.3. All leukocytes WNL except BASO slightly high at 0.1/1.6%. Platelets are only 557. All-in-all - phlebotomy-only seems to be working for me at this point. I also had to d/c aspirin due to risk of brain bleed. Like PV wasn't enough - the docs found a rather large tumor in the occipital lobe. It has been hemorrhagic and is surrounded by edema. So my care is now a bit more complex. Will be doing a resection for the tumor in June. The PV affects the tumor, and tumor treatment affects the PV. I am currently seeing an entire hospital's worth of doctors! Do lets stay in touch re. the PV treatment. Not all docs are keen on chemo-cytoreduction for all patients. Interested to hear how others are doing with this approach.

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Hi Hunter, just looking through your posts after your kind reply to mine. How did your procedure go? I hope you are doing okay!

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I had the tumor resection on June 17. It was an open brain procedure (craniotomy) where they created a bone flap, exposed the brain and went in to get the tumor. I am fortunate in that they were able to go in underneath the brain to get to the tumor. They did not have to cut through the parenchyma to get at the tumor, which was periventricular near the right occipital horn. The presentation was a bit more complex in that the tumor wall was enmeshed with optic nerve fibers running along the wall of the ventricle. Therefor, they had to leave some of the tumor wall behind to protect the optic nerves. They still do not know what kind of tumor this is. Other than to say it did not look "aggressive" (e.g. is not a glioblastoma), the word is we will just have to wait for pathology to complete the assessment. Should find something out next week when I see the neurosurgeon. It is likely some form of lower grade malignant glioma. I suspect it is a grade 2 tumor based one everything we know, but time will tell. I have a coexisting genetic condition , Neurofibromatosis type 1 that predisposes me to certain types of CNS tumors. Pilocytic Astrocytoma and Pleomorphic Xanthoastrocytoma are two NF1-related tumor types on the list of possibles. One of the neurology teams thinks it looks more like a PXA than anything else, but that is just an educated guess. Hopefully it will end up being something that does not require follow up chemotherapy or radiation.

I am recovering well for an old guy who just had his head cut open and a tumor sucked out. They discharged me two days after the surgery and I went home with family to recover. The large skin flap that is stapled together hurts a bit, but I refused all opiates (detest them) and am fine with just Tylenol. There are some minor visual side effects, but they are expected to be temporary. I tire very easily, but seem to be gradually getting my energy levels back up. I am not pushing it, am abiding by the activity restrictions (though they chafe), and am just going to give myself time to heal and recover. One thing that has made a big difference is that prior to surgery I started practicing Qi Gong. I have a terrific Sifu (teacher) who started me out with some very gentle basics that are making a big difference. The 10 forms and the Six Healing Sounds are having both physical and mental/emotional benefits. The Qi Gong is promoting healing and the mindfulness that comes from it's practice is calming at a time that would otherwise be very stressful.

Thanks for asking about my recovery. The support we get from this forum is wonderful. We are all dealing with conditions that can be difficult, stressful and confusing at times. It is really a blessing to have a group pf people who understand what we are going through and can offer support, information and a shoulder to lean on. We are indeed stronger together. All the best to you.

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